Johanna K. Lake

Disparities in diabetes prevalence and preventable hospitalizations in people with intellectual and developmental disability: a population-based study

To describe and compare population‐level aspects of diabetes and diabetes primary care among people with and without intellectual and developmental disabilities.

Mental Health Services for Individuals with High Functioning Autism Spectrum Disorder

Adolescents and adults with an autism spectrum disorder (ASD) who do not have an intellectual impairment or disability (ID), described here as individuals with high-functioning autism spectrum disorder (HFASD), represent a complex and underserved psychiatric population. While there is an emerging literature on the mental health needs of children with ASD with normal intelligence, we know less about these issues in adults. Of the few studies of adolescents and adults with HFASD completed to date, findings suggest that they face a multitude of cooccurring psychiatric (e.g., anxiety, depression), psychosocial, and functional issues, all of which occur in addition to their ASD symptomatology. Despite this, traditional mental health services and supports are falling short of meeting the needs of these adults. This review highlights the service needs and the corresponding gaps in care for this population. It also provides an overview of the literature on psychiatric risk factors, identifies areas requiring further study, and makes recommendations for how existing mental health services could include adults with HFASD.

Lessons Learned From Our Elders: How to Study Polypharmacy in Populations With Intellectual and Developmental Disabilities

Polypharmacy is the concurrent use of multiple medications, including both psychotropic and non-psychotropic drugs. Although it may sometimes be clinically indicated, polypharmacy can have a number of negative consequences, including medication nonadherence, adverse drug reactions, and undesirable drug-drug interactions. The objective of this paper was to gain a better understanding of how to study polypharmacy among people with intellectual and developmental disabilities (IDD). To do this, we reviewed literature on polypharmacy among the elderly and people with IDD to inform future research approaches and methods on polypharmacy in people with IDD. Results identified significant variability in methods used to study polypharmacy, including definitions of polypharmacy, samples studied, analytic strategies, and variables included in the analyses. Four valuable methodological lessons to strengthen future polypharmacy research in individuals with IDD emerged. These included the use of consistent definitions of polypharmacy, the implementation of population-based sampling strategies, the development of clinical guidelines, and the importance of studying associated variables.

Understanding and Improving Care for Individuals with Intellectual and Developmental Disabilities in the Emergency Department

Abstract Individuals with intellectual and developmental disabilities (IDD) represent one of the most complex, poorly understood, and under-researched patient populations. The objectives of this review are threefold: (1) first, we provide an overview of existing research on patterns and predictors of emergency department (ED) use among persons with IDD. Population-based studies suggest that individuals with IDD are more likely to visit EDs and to visit more frequently for both physical and mental health issues. We also discuss the predisposing, enabling, and clinical need factors that contribute to emergency service utilization in this population. (2) The second objective is to summarize what is known about the care received by individuals with IDD in the ED. Qualitative research suggests that the care provided is suboptimal from the perspective of patients, their families, and ED health-care providers, with multiple barriers. (3) The final objective is to describe interventions to improve emergency care for persons with IDD, including a pilot evidence-informed approach to implementing practice change in the ED. Our ongoing work is revealing important barriers and enablers to practice change including a discomfort of staff to identify patients with suspected IDD, challenges in developing a system to flag patients with IDD in the ED, the need for educational resources to help adapt their communications and general approach to patients with IDD, and the need to develop and embed tools within the ED care pathway to assist in providing discharge instructions. Crowding and resource limitations within the ED setting may further exacerbate these care challenges and heighten the importance of facilitation in achieving practice changes.

Psychotropic Medication Use Among Adolescents and Young Adults with an Autism Spectrum Disorder: Parent Views About Medication Use and Healthcare Services

OBJECTIVE Psychotropic medications are frequently used to treat mental health and behavioral issues in adolescents and adults with an autism spectrum disorder (ASD). Although parents of individuals with ASD frequently take on medication management for their child, there is limited literature on parent perspectives of their childs medication use or their views about the healthcare services they receive, particularly in adulthood. The current study examined and compared parents of adolescents and of young adults with ASD regarding their childs psychotropic medication use and their views about healthcare services. METHODS One hundred parents of adolescents and young adults with ASD (ages 12-30 years) completed an online survey about their experience with their childs healthcare services and medication use. RESULTS Parents of young adults were less likely to use nonpharmacological services before using a psychotropic medication than were parents of adolescents. Parents of young adults were also less likely to believe that their prescribing healthcare provider had adequate expertise in ASD, and were less satisfied with how their prescriber monitored their childs medication use. CONCLUSION Findings highlight the need to build capacity among healthcare providers supporting individuals with ASD as they transition into adulthood. There is also a need for improved medication monitoring and increased awareness of the different mental health challenges that individuals with ASD encounter as they age.

Child, Parent, and Service Predictors of Psychotropic Polypharmacy Among Adolescents and Young Adults with an Autism Spectrum Disorder

OBJECTIVE This study examined the child, parent, and service factors associated with polypharmacy in adolescents and young adults with autism spectrum disorders (ASD). METHODS As part of an online survey examining health service utilization patterns among individuals with ASD, parents provided demographic and clinical information pertaining to their child. This included information on current medication use, as well as information on clinical services received, clinical history, and parent well-being. Analyses examined the bivariate association between individual child, parent, and service variables and polypharmacy. Variables significantly associated with polypharmacy were included in a multiple variable logistic regression. RESULTS Of the 363 participants sampled, ∼25% were receiving two or more psychotropic drugs concurrently. The patients psychiatric comorbidity, history of hurting others, therapy use, and parent burden were predictors of polypharmacy. CONCLUSIONS Adolescents and young adults with ASD are a highly medicated population with multiple factors associated with psychotropic polypharmacy. Although there may be circumstances in which polypharmacy is necessary, a richer understanding of what predicts polypharmacy may lead to targeted interventions to better support these individuals and their families. Findings also highlight the need to support families of children with ASD prescribed multiple psychotropic medications.

Inpatient Mental Health Services

This chapter provides a review of key issues concerning inpatient psychiatric services for individuals with intellectual disabilities (ID). Such a review is very much impacted by the time in which it is written. A similar chapter written 20–30 years prior would focus on long-stay hospitals for individuals with ID. However, with the deinstitutionalisation movement impacting many parts of the developed world, the purpose of hospitalisation has shifted to short-term treatment of acute psychiatric issues. This chapter focuses on papers published within the past 10–20 years. Section “Profiles of Inpatients with ID” describes what we know about the profile of individuals with ID that are hospitalised for mental health or behavioural concerns. We review in some detail the two main models of inpatient care: mainstream or general services and specialist units. We will describe what is known about how the two models differ as well as the risks and benefits of each. Section “Issues Pertaining to Hospitalization” focuses on clinical considerations and challenges with inpatient care. Finally, the chapter concludes with new directions for models of inpatient care and areas requiring further research.

A Review of Canadian Mental Health Research on Intellectual and Developmental Disabilities

This article summarizes Canadian research in “dual diagnosis” spanning the past 20 years and places this research within a historical and policy context. Canadian researchers have made important contributions with regard to understanding inpatient and outpatient mental health services, families, autism, specific disorders and behaviors, aboriginal mental health, forensics, and emergencies. In this article, we aim to summarize several of these contributions. Following a summary of recent research findings, we offer some suggestions and directions for future research in our country.

ACT Processes in Group Intervention for Mothers of Children with Autism Spectrum Disorder

Few studies have examined interventions or therapeutic processes that may help parents of children with Autism Spectrum Disorder (ASD) manage their stress. This study examines the impact of a brief Acceptance and Commitment Therapy (ACT) group intervention, led by parents, among a cohort of 33 mothers of children with ASD. Changes in ACT process measures (psychological flexibility, cognitive fusion, values) were evaluated at pre, post, and 3 months following the intervention. Mothers reported significant improvement post-intervention in psychological flexibility, cognitive fusion, and value-consistent activities in multiple life domains, including parenting, relationships, and self-care. These improvements were maintained at follow-up. The results provide preliminary evidence that improvements observed in depression and stress may be mediated by cognitive fusion and action-values consistency.

Parent Perspectives on Psychotropic Medication Use and Interactions With Prescribing Health Care Providers Among Adolescents and Adults With an Autism Spectrum Disorder

Adolescents and young adults with an autism spectrum disorder (ASD) are often prescribed psychotropic medications to treat mental health and behavioral issues, and parents of these individuals play a crucial role in overseeing this care. Despite this, little is known about parents’ experiences managing and monitoring their child’s medication treatment, or their experience interacting with prescribing health care providers. To learn more about parents’ perspectives on psychotropic medication use in their adolescent or young adult with ASD, a focus group was conducted with seven mothers whose adolescent or adult child with ASD was prescribed one or more psychotropic medications. Results are summarized according to emergent themes including parent perception of child experience with medication, side effects, medication efficacy, medication monitoring, expertise issues, and service issues. Parents also provided medication recommendations, including a desire for health care providers with greater expertise in ASD, information on medication, and tools for medication monitoring.